Heroes come from all backgrounds and all walks of life, but one defining characteristic of a hero is they almost never consider themselves as such. That’s probably because a real hero doesn’t set out to be one; they set out to make the world and better place, and being considered a hero was never part of the plan.
The Hero Award is the highest honor given by The ALS Association. Each year, we recognize people living with, or who have lived with, ALS who have made a significant impact in the fight against the disease. This year’s honorees—Patrick Dolan, Steve Kowalski, Joel Shamaskin, David Tomassoni—have all made a lasting impact for the ALS community.
Patrick Dolan: Mapping the Future of ALS
Patrick “Pat” Dolan has had a lifelong passion for technology, data, and how these tools can be used to make the world a better place. Pat was a solutions team lead at Esri, a geographic information system (GIS) company, when he was diagnosed with ALS in 2016. When ALS forced him to retire in 2018, it seemed possible that part of his life was over, but it was far from it.
Joining forces with friends and former colleagues at Esri, Pat set out to develop an ALS clinic locator, a resource that would enable the ALS community to easily locate ALS multidisciplinary clinics and affiliated clinics by way of city or zip code. And if the task of mapping ALS clinics across the country wasn’t enough, Pat and his band of mappers have decided to go even bigger, developing a global clinic locator tool as well.
”I was very humbled to receive this award because this award is a reflection on the hundreds of people who have enabled me to continue my life's work,” said Pat when he received his award. “It might take a village to raise a child, but it takes a small to medium sized city to enable people living with ALS to thrive. Those who enable us to thrive with ALS are the real heroes for me.”
Steve Kowalski: Staunch Advocate for the ALS Community
Since being diagnosed with ALS in 2017, Steve Kowalski has made fighting ALS his full-time job. He is known as a tenacious ALS advocate, serving on the Massachusetts Chapter Board of Directors where he chair’s the advocacy committee, serving on The ALS Association Public Policy Committee, forming a group of people with ALS and caregivers to begin lobbying at the state level in Massachusetts.
On the national level, Steve’s advocacy efforts were instrumental in the passage of the ALS Disability Insurance Access Act, removing the 5-month waiting period for people with ALS giving them immediate access to their Social Security Disability benefits. Steve is also an ALS fundraising force, with his Ride to Defeat ALS team, “Apple Friends for ALS.”
”I struggled a bit when I was told I was receiving the ALS Heroes Award because I do not consider myself a hero. It's a big word with big shoes to fill,” said Steve. “A hero to me is a person who has saved a life or lives, profoundly changes the world for the better or made a selfless sacrifice to end mistreatment. I will accept this award with one caveat: as part of The ALS association, I view myself as part of collective heroism.”
Joel Shamaskin: Inspiring and Caring for Others While Fighting ALS
Joel Shamaskin’s 30 years of caring for others as a primary care physician before his ALS diagnosis gives him a unique perspective on the disease. His wife Ann was a primary care physician as well, so they both had an understanding of the progression of the disease when Joel was diagnosed in 2016. But being a man of exceptional courage and compassion, Joel quickly committed himself to doing whatever he could to ensure that those living with ALS had the information and the resources they need to live their lives to the fullest.
In 2021, Joel enthusiastically undertook the role of Walk Ambassador for the Rochester, New York, Walk to Defeat ALS®. And being both a physician and a person living with ALS, Joel’s voice has been invaluable as an ALS advocate at both the state and national level.
“I like to think about why it feels good to become active within an organization like The ALS Association or other activities that furthered the cause of a broader community. I believe it is because it helped give our life meaning for me,” Joel said upon receiving the ALS Hero Award.
David Tomassoni: Ensuring Care for People Living with ALS
David Tomassoni had been a Minnesota state senator for 21 years when he was diagnosed with ALS in 2021, but Senator Tomassoni was determined that his diagnosis would not be the end of his legislative career. Building on the relationships and reputation he had built during his time serving the people of Minnesota, on March 1, 2022, he introduced legislation that included a $25 million grant to fund ALS research and support caregivers in the state.
Even as his disease progressed, he shepherded the legislation swiftly through the state legislature, garnering bipartisan support from his colleagues to ensure its passage. Senator Tomassoni was able to attend the signing of the bill even though he was no longer able to speak. He was able to thank the governor, his colleagues, his friends and family in his own words using assistive technology. Sadly, Senator Tomassoni passed away on August 11, 2022.
His son Dante accepted his ALS Hero Award on behalf of their family. “I know (my dad's) goal was to cure this disease,” he said. “And I can't stress upon the community enough how important it is that we find a way to do that, and that we make that our goal to cure this disease. And it's something that is attainable, with the right resources and the right focus, and I look forward to being a part of that fight and helping carry his legacy.”